Figuring out how to identify yourself in relation to MS can be tricky. Do you consider yourself to "have" MS, or are you simply living with it? And what about the phrase "MS warrior"? Is it empowering or too aggressive?
The origin of the phrase is not entirely clear, but it likely grew out of the need for us to find a way to identify ourselves after being diagnosed with MS in a positive and empowering way.
It goes without saying that there is no right or wrong way to identify with MS. How we do that sets the tone for the rest of our journey.
We asked the Shift.ms community how they identify with MS and here are ten of the most interesting answers:
*a note to say that names have been omitted for anonymity.
“I used to say that I suffered from MS but now I say that I have MS 💚 I used to say that I hated my MS but it didn’t really help me, as it is now part of me, I was essentially saying I hated myself !! And that’s not fair on my little body who has embraced MS and is working with it and round it the best it can 👏”
“When I was first diagnosed/really struggling depression and the grief with having to change lots of things about by life to function. That is when I hash-tagged MS warrior a lot as a way to help me mentally process what I was going through. I needed that empowerment.”
“I have MS. But like, I also have a dog. I have tattoos. Having something doesn’t have to define you.”
“If I’m describing how MS specially impacts me, I say “my MS.” If I’m describing how MS generally impacts or can present in others, I use “MS.” I alternate between “I have MS” and “I’m living with MS” because both are true. I rarely use “MS warrior” because I deserve gentleness and care — not a battle (even if it feels like I’m in one). I also use the terms spoonie, chronically ill, and disabled.”
“Newly diagnosed, still trying to pretend it isn’t actually true!”
“MS warrior really grinds my gears, disease isn’t so binary that it’s a battle with winners and losers. I’ve got MS, I’m disabled and that’s all okay.”
“Ouff. This is a loaded question. I feel it wholly depends upon one's relationship with oneself. I've had to really push ahead/forward in this journey and that's why I will use the label of MS Warrior.”
"I'm happy with whatever term people want to use. My focus is on living my best life with MS, not what I'm called."
“I have MS. Dislike warrior. Depending on who I’m speaking with, I might say something slightly humorous like “it’s like my mother in law came to stay for a weekend and then just never left…”. It’s just a tactic to redirect and make the other people more comfortable. Works in awkward work settings 🙃 *my mother in law is a fabulous human being*”
“I have MS. However anyone else chooses to label themselves; whether MS Warrior, my MS, or other, comes with no judgement from me. We're all in the same water, but slightly different boats”
As you can see, opinions on how to identify with MS varied greatly among the Shift.ms community. Some people prefer to say they are "living with" MS while others don't mind being called "MS warriors." Some people don't like being labeled as anything at all. The main point is to remember that everyone's experience with MS is different and it is important to be understanding of that.
You don't have to stick to a particular phrase or label. What is most important is to find something that resonates with you and makes you feel safe, happy, and empowered. Remember, you have the final say in how you define yourself.